A few days ago, Janice ended eleven years of hiding her invisible illness from the blogosphere. As mom bloggers, we share many parts of our lives, but keep certain stories private. Janice has battled a confusing and misunderstood chronic illness for 30 years and she usually finds it easier to keep her struggles to herself. But our good friend Tasra Dawson inspired Janice to share her story.
Tasra is creating a documentary about Invisible Illness to help people know they are not alone. And to help spread awareness about the documentary, Janice and Tasra are sharing their personal stories of living with chronic illness.
You can read Janice’s story in Thirty Years Later — The Story I Never Told You.
Today, Tasra is sharing her insight into how to explain your chronic illness.
What are you doing now?
You’re still dealing with health issues?
Well, you look good.
I hope the next time I see you, you’re better.
You’re no fun.
If you’ve heard these statements, you could have a chronic illness. And you have probably learned to hide it and suffer in silence because the frustration of misunderstanding and misinformation can just add to the weight of your struggle.
If you don’t have a chronic illness yourself, please keep reading. I guarantee you know someone who does, either online or in person and the insight and sensitivity you gain will be invaluable to their healing.
One of the most profound statements I’ve heard after two years of interviewing people for the Invisible Illness documentary film is this…
It is exhausting. But here’s what I’ve learned… staying silent doesn’t make it any less so. What it does is isolate and separate because people don’t understand and silence only widens that gap of misunderstanding. Finding the courage to speak up allows for grace and compassion to enter your life in ways you might not have imagined.
Don’t feel like you have to give the play by play of how you got to where you are. Start small so that people have time to process what you’re sharing. You didn’t learn all you know in one overwhelming moment, it was doled out in diagnosis after diagnosis, appointments, doctors, research, books, and so many other ways over time. Give loved ones that same chance to absorb the information and respond in kind.
So how do help someone without your condition understand?
Here are a few strategies you can try, when you have the strength and the emotional energy. Do not feel obligated to try them all at once. Think about it. Try them on for size. Practice in the safety of your own home. Then give it a whirl… maybe via email or online at first for a little buffer from the confused looks. Then when you feel emboldened, try it in real life. You just might find it transformative – for you and for your loved ones.
#1 – Tell the truth.
When someone asks how you are doing, tell them. Maybe with a short or small example:
This morning I really struggled to get in the shower because every time I do, I get really nauseous and dizzy and get scared I’ll fall down and hurt myself.
I had to check my blood sugar six times in a row because I was shaking so much I kept messing up the test. And each blood sugar test strip costs me a dollar so I could have bought a cup of coffee and a muffin for that!
My world and identity feel like they have shifted into an alternate universe that separates me from the life I had and the life I imagined. I can’t even _____________ anymore.
I’m sure you have some, if not many, of your own little vignettes you could share. Try one out the next time someone asks, instead of saying “I’m fine.” You won’t overwhelm them with the saga of everything you go through, but you’ll alert them to the reality of your daily life.
#2 – Speak up.
Many times our illnesses are aggravated by certain situations, like loud bars or restaurants without food we can eat. Instead of going along and not eating, or just finding an appetizer you can nibble on, speak up and communicate the type of food you need. Even if you are just one person in a large group, it’s okay to communicate your needs.
Chances are that you aren’t the only with food restrictions and your courage could give someone else the strength to stick with their dietary needs as well. You could even steer the conversation to health and healing rather than the latest viral video.
I know you don’t want to be a burden. No one does. If you’ve struggled with chronic illness for any amount of time, you probably already feel like one. You are not a burden. I’m telling you this truthfully. I know it’s hard to believe or let it sink in. You are a teacher… teaching kindness, compassion, sensitivity, empathy and so much more. Repeat that to yourself when you lose your courage because the more you speak up, the more you will communicate to your body that it has an advocate and a friend in you.
#3 – Provide updates.
Whether things change rapidly with you or they feel like they never change, give people an update. Let loved ones know where you are and how it feels to be where you are. Have you lost a part of your identity or ability? Has your food list expanded or shrunk? Are you taking more or less medication? These are such standard conversations for spoonies, but not for the general public, so bring them into the conversation.
If you provide regular updates, via email, text or chat, people know how to check in on you or pray for you. Their words, gifts and invitations can be more tailored to your current circumstances, rather than misguided information. Consider sending them one simple reference source or two where they can find more accurate information. Better to have them know the best source for good info, rather than doing a generic search and finding sites that discount your symptoms, illness or diagnosis.
When someone shows an interest, ask them if they’d like to know how it feels. If their questions seem insensitive, try to believe the best about their intentions and remember how you felt when you first heard about or started researching some of these conditions. I know that medical jargon becomes second nature to someone with chronic illness, but that’s not the case for the general public.
Stop suffering in silence.
I will be the first to admit that these are not easy steps. It feels easier to stay silent, at least in the moment. But long-term, you will cut yourself off from relationships if you suffer in silence rather than in community.
These are not lessons I learned from a book, but hard-fought lessons learned in the trenches of multiple chronic and invisible illnesses. Not only my own, but those of countless other spoonies who I have interviewed for Invisible Illness, a feature documentary I felt compelled to create to bring hope and stories of resilience to those suffering with and caring for those with chronic conditions.
The film provides a new perspective for caregivers and those without illness. It offers a common language and the voice of someone other than you sharing what you’ve tried to communicate. We hope it will bring a sense of community and connection to all who see it because ultimately we all need to know that we are heard, that we are seen and that we are not alone.
Be sure to also read Janice’s post about her chronic illness: Thirty Years Later — The Story I Never Told You
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Written by Tasra Dawson co-creator of the Invisible Illness Documentary Film – You Are Not Alone. This feature-length documentary sharing stories of hope, resilience, and courage from those living with and healing from Invisible Illness.